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e-Rehab: Organizing Good Lives for Those with Brain Injury

E-Rehab. I’d never heard of it before this week, yet it makes so much sense. At last, I thought, two people in the health care community are acting on the fact that those with brain injuries need lifelong support around things like scheduling and organizing, long after they’ve left rehab and active treatment.

Although I know how to schedule, I have real trouble scheduling and organizing myself for reasons I cannot fathom. I can get a thing done in response to a stimulus, but not all the time. Still, how often can I rely on getting a stimulus from a phone call or e-mail or a well-timed random thought? Then there’s the problem that unless I write a ToDo down, I cannot even make a simple phone call. Basically, if I’m not scheduled and do not have a predictable routine, I do a lot of spinning my wheels, unnecessary stuff, staring into space as I try to think about what I’m supposed to be doing. I waste too much energy. Important things don’t get done, done late, or only half-done then never finished. Worst of all, I’m dead tired without having been productive or working on my priorities, and it doesn’t take much to tire me out as it is.

As of this year, I am finally getting once-weekly (less on holiday weeks) scheduling support. It has been God sent! The therapist comes to my place for one-on-one and face-to-face discussion of my schedule. Face-to-face is important for effective communication. We go over my priorities for the week and the most doable times to schedule them in. However, the rest of the week I’m on my own, and so if I run into a hiccup, which can happen for the most amazing reasons, like there’s an extra step we didn’t anticipate, I get stalled, and I have to wait until our next scheduled meeting. This is a big drawback of traditional support.

But e-Rehab allows for more frequent and more active support. If I run into a hiccup, the e-Coach could get me going again in a more timely fashion with no initiative required on my part (waiting for me, or most people with brain injuries, to have initiative would be like waiting until after the cows came home and were fast asleep). And, as well, if a client was having a bad day (or week), sessions can be easily rescheduled — no having to wait a week or more once you’re back on your feet and no having to try to remember how to get in touch with them to cancel a session either. (I do have the phone numbers for my therapists/managers somewhere around here…).

Basically, e-Rehab is all about organization that works. It’s about turning you from a sloth in front of the TV to a productive individual who’s part of society by filling in the piece missing from your brain.

With e-Rehab, you get assigned an e-Coach, who can be a rehab support worker, a friend, or a parent. You must have a computer and Internet access. They will help you set up your computer — and your e-Coach’s too if it’s not their support worker. They will even  build a computer that doesn’t require thought to use, simpler than a Mac. You need a calendar that someone else can view over the Internet, like iCal or, I think, Google Calendar. You need chat capability and video chat through Skype. Skype-to-Skype communication would be particularly helpful if your e-Coach is in a long-distance area code. That’s it. There is one useful option for those who have big trouble getting going: remote computer control so that your e-Coach can turn on your computer. More on that later.

At a prearranged time, from several times a day to once a week, depending on your need, you fire up your computer, launch your calendar, turn on chat, and connect to your e-Coach through video chat. S/he does the same. The face-to-face aspect of video chat makes it much easier to discuss your schedule and understand what your e-Coach is telling you than if done over the telephone. Amazing that the e-Rehab folks get this, get that video chat closely mimics the ideal scenario of the Coach being there in person, that many of us understand English better face-to-face, lips in full view, than over a phone. Once you’re connected, you discuss your priorities for the week; you may also discuss your overall goals and how your daily or weekly priorities will help you meet those goals. I’m over 10 years post, and only this last month was I ready to discuss overall goals, and short-term ones at that. So goals may or may not be relevant. Your e-Coach will need to be aware of basics like travel times, what things fatigue you fast and what don’t, rest times, and so on during scheduling. The idea is to help you organize your events and tasks in a doable way, not in a wouldn’t-this-be-great way. There’s nothing worse than being ambitious, trying to fit in as much stuff as “normal” people, and failing miserably. You do what you can manage. As you and your e-Coach discuss your schedule, you type in the events and tasks so that you retain a sense of control over your schedule. S/he may need to prompt you to do so but you typing is a great way to gain a feeling of mastery over your own life. If the e-Coach types them in because it’s faster or easier, then it perpetuates the idea that you’re a child who cannot become independent and self-directed.

Even with all this help, there remains the problem of actually checking your schedule. If you don’t check it, you can’t do it. You may not have trouble with remembering to check for days at a time, but then for some mysterious reason, if you’re like me, you’ll totally forget to do so one morning and will keep forgetting until suddenly you realise days later you’re supposed to be reviewing the schedule first thing. There’s now help for that issue too.

I dreamed of various solutions, especially the idea of having a smart computer that comes on as I enter the kitchen for breakfast. It would say, “Good morning Shireen. Let’s review your schedule and adjust the time of your first event, as I see you’re starting earlier than usual today.” But now there’s a real solution: with remote control access to your computer, your e-Coach can turn on your computer, which is sitting beside your bed, pop up on your screen, and say, “Rise and shine! Time to get up and review your schedule for today.” This is the first time I’ve heard anyone in the health care community acknowledge that getting going is a problem that needs a solution and has come up with one. It’s not about depression; it’s about initiating and motivation — those mysterious processes in the brain that are royally screwed up in those with brain injuries.

So you want to know who these amazing people are? Unfortunately, I don’t know what the company is called because the guys who presented e-Rehab at the BIST meeting (Brain Injury Society of Toronto) didn’t hand out brochures or business cards, and they didn’t stay afterwards to take questions! I didn’t take notes either because I can’t write down stuff and listen at the same time. However, with today’s technologies, and a willing computer-savvy partner, anyone with a brain injury could set this up. It’s an exciting first step. It’s the first indication I’ve seen that someone understands that just because you have a brain injury and are missing this function doesn’t mean you cannot be independent and productive, does not mean you cannot have a purpose. It’s the first time I’ve seen those in the health care field make a concerted effort to learn the technology so that they can help those with brain injuries. Up to this point, the Occupational and other Therapists I’ve met have been pretty much techno-ignoramuses. I’m appalled at how little they know about computers and how they don’t even see them as a tool to liberate their clients. They see no need to learn how to use computers and handhelds themselves. The therapist I have now is unusual in her openness to computers, but even she needs to learn more about what technology and computers can do to help us. The e-Rehab folks are leading the way. It’s about time.

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